#infantilespasms

[freddieos-mum]

In the last month or so Freddie Cheese has discovered his index finger on his right hand (lazy lefty is always much further behind on milestones) and it’s amazing, not only does he was to point at everything when you’re reading a book but he also has the strength to press buttons on his toys. Along with his strengthened index finger has come the ability to pick items up with his pincer (mainly food) and his pinch has reached a new level of pain. For a child whose fine motor skills have always been extremely poor this is huge, literally huge! It means the way he plays has changed and he understands the power of the point (when they point and you have to say what it is their pointing at). I’m currently enjoying watch him repeatedly press Beat-Bos buttons then pointing to his eyes/tummy in turn and looking for me to say the word. This child continues to amaze me daily. Not only have his fine motor skills improved but he’s also making progress with sounds and communication. Freddie can now produce the ‘T’ sound, often just saying ‘tttttttttt’ to himself. He can say Mama and Dada and he knows who we are, he’s called out ‘mama’ a couple of times when he’s wanted me. There’s a few other sounds he can make but, in more general terms, he tries to repeat sounds we make when we talk to to him. He also understands ‘cuddle’ if I ask him if he’d like a cuddle or I say ‘mama cuddle’ he will roll over to me and hold his arms up if he’d like a cuddle, if he’s sitting on my lap he’ll throw his arms around my neck and nuzzle in, or he’ll make it perfectly clear he doesn’t want one. We think he understands quite a lot of words. Ultimately it’s about repetition and making things simple for him, which we do. We also use a handful of makaton signs which he is starting to get (extra thanks to Mr Tumble) and he can sign ‘friends’, he’s also got much better at waving/clapping. He’s started moving his hands more and we think he’s trying yo use more signs but we’re not sure what they are yet. Basically, Master Cheese is coming on leaps and bounds! It’s genuinely incredible to witness but I can’t help but have a lump in my throat about what might be around the corner. I guess that will always be the way though, it certainly doesn’t take away from our enjoyment of now.

[mysonshiva]

Up, above the rods so high

Shiva has been climbing up on anything with rods or handles. It is not a new development, but the agility and confidence have risen. It is a gradual, but systematic process for him. He will set foot at the lowest step and then using his arms, he slowly, and calculating, climb up. This new home has a door made of iron rod columns for the balcony. From the living room, he has direct access to these doors, especially with the curtains drawn open. 

This is where he has been practicing for the past couple of months, and today he took his practice a step outdoors, on the monkey bars in the play area. And how he climbed! He was thrilled. as dextrously and carefully as he can, he slowly and steadily went high until he looked like he was on top of the world. 

A good day, today. Overlooking the little incident at the sand pit where he tested the soil by pushing a fistful into his mouth. He enjoyed the texture, especially all the gritting stone between his tiny teeth. But, he was told very firmly to not do this again as I rushed to flush out the sand from his mouth at a nearby tap. 

Baby steps, and we don’t mind it. 

But, coming to that though. He is no baby any longer - this little monkey is turning five in less than three months! FIVE! Goodness. 

[a2zmedicalnote]

The term Infantile spasms syndrome defines an epileptic syndrome occurring in children younger than 1 year (rarely older than 2 years), with clinical spasms usually occurring in clusters whose most characteristic EEG finding is hypsarrhythmia [the spasms are often associated with developmental arrest or regression].

[blackalecat]

Twin #kenogenic #vegan lunch! They tend to get jealous/ curious of one another's food so I try to make them as similar as possible. Both plates ended up on the floor but thankfully most of the food ended in their bellies. They also enjoyed a #homemade ice cream. #iswarrior #infantilespasms #18monthold #13monthsold #cousins #lunch #lunchtime #veganeats #veganbabyledweaning #babyledweaning #tofuscramble #coconutyogurt

[thecaregiverspace]

We've had a rough time since yesterday. His little face is already puffy from the steroid. He's still having cluster seizures very frequently and is very fussy. He's hungry all the time but has diarrhea and vomiting from the steroid. He's on Zantac to protect his stomach but that only goes so far. We're allowed to give him Pedialyte to prevent dehydration. Hopefully the steroid will start working soon, otherwise, we will begin an anticonvulsant medicine. Who knows what kind of side effects that will have. We see his pediatrician tomorrow for bloodwork. Please pray that the seizures stop soon and we get the answers we need. That's all we can do. #ollieISstrong #olliejollybear #infantilespasms #epilepsy #facesofcare #littleseizuresbigconsequences #littleseizures #epilepsyawareness 📷: @ollieisstrong http://ift.tt/2ry4LH1

[rivercove04]

Many of you have been on my journey of tragedy where in 2015 my son became ill resulting in extensive brain damage..then a rare form of epilepsy attacked him which we battled for years. It was awful. To have to give steriod injections daily into your child, fill his body with seizure medications, watching him slowly disappear due to Medical induced sleep. I knew ultimately we had to do whatever we could to stop the seizures to protect his brain from any further damage, but this mommas heart shattered. Then a year later I lost his father, my late husband, to a long battled of mental illness. Then after a divorce. None of this I asked for and those years were so incredibly hard. Emotionally,physically,financially. I had to share to say dont give up no matter what. Keep getting up. Keep moving. These hardships made me stronger. Made me who I am today. If it wasnt for those journeys, I wouldnt be where I am today. Josiah lead me to becomes a foster parent, then a special needs medical foster parent, to becoming Amirs mother. To giving even more children a home who would have not had a hard time due to their medical needs. It also brought me the most incredible husband who trained while we were dating to become trach vent so he could help care for our son. Who we now also care for our foster daughter. He devotes endless hours of the day sitting in hospitals if one of the kids get sick or takes time to play with them. He is such a blessing to our family. He is my best friend. We still have our hardships and struggles, after all we live in a broken world. Just have faith in everything that whatever you have been through or are going through, it WILL get better. It WILL make you stronger. Just have faith ♥️ Thankful for all of you who have continued to support maddiesmadhatters.com to help us to continue to be home and care for these children in their time of need. #medicalparents #medicalfosterparents #therapeuticfostercare #fostercare #specialneeds #specialneedsparents #specialneedsfamily #strength #nevergiveup #faith #youwillbegladyoudid #youvegothis #trachbaby #trachlife #digeorge #cerebralpalsywarrior #cerebralpalsy #cerebralpalsystrong #infantilespasms #epilepsymom https://www.instagram.com/p/CIdLpAYFQK4/?igshid=wajjp4ti95gw

[freddieos-mum]

2017...

was another year of knowing mitochondrial disease exists, another year watching it fight against our boy, feeling the heartache and loneliness that comes with it. Before this disease came into our lives, I guess, New Year was a time of hope, positivity and fresh starts. I can’t enter a new year with the same hope or optimism anymore. Of course there are moments of hope but I can’t look at a 12 month calendar and have hope or ambition for that length of time. Is that something that happens with age anyway? Or is it just the disease which has changed me? I know that those 12 months will be filled with as many highs as lows, they’ll be lots of laughs as well as tears. I just have one ask 2018, please, this time next year let Freddie Cheese still with us, please allow us to celebrate another Mothers Day, Fathers Day, birthdays and Christmas as a family. I promise I won’t waste any opportunities and we will live life to the fullest if you’ll let us.

2017, I will take from you our memories; we went to Brighton, Cologne, Paris, Centre Parcs, I completed Tough Mudder and two 10k runs to raise awareness for The Lily Foundation, as well as a radio interview about mito donor IVF and a newspaper interview about Freddie to support Jeans for Genes, Freddie had a gastrostomy fitted but he grew stronger, started eating and chewing better than ever, he discovered his index finger which means his pincer (and pinch) have improved ten fold, he can manoeuvre himself with purpose and empty the DVDs under the TV, he’s not had a seizure for eleven months (although I won’t hold my breath), he spent less time in hospital than 2016, we’ve taken him bowling, he’s been in a trailer on a bike, he says ‘dada’ and ‘mama’, he can sign ‘friends’ and he’s completed a term at nursery only having one session off because of illness, he’s been to numerous local shows, seen a musical and been to an art gallery in London, and he can sit unaided for his longest time ever (but not indefinitely). Most of all, we have laughed, we have laughed a lot. I actually think we have laughed harder than we’ve cried this year. That is an achievement in itself.

Tonight, I will take a moment to think of all the warriors (and their families) who lost their fights this year. Little heroes every single one.

Enjoy your celebrations everyone, after my curry I am off to bed... and I’m sure I will watch the monitor closely and enjoy listening to the sound of Freddie’s breathing for a little while before I fall asleep.

[sunovion-epilepsy]

#MyEpilepsyHero is our daughter, Gabby, who shows us every day how to live an incredible life with #infantilespasms #epilepsy Read her story here: https://t.co/WI9v9JvIjS http://pic.twitter.com/CSRUdTMVL5

— Chris Seay (@ChrisSeay104) December 13, 2017

[sqwehrman]

Last Charlie post for #ISAW2016 here on sqwehrman, because we want to end with HOPE. When Charlie was diagnosed, we didn’t know what his future would hold.  All we wanted was for him not to regress, so our blog sort of became a tracking instrument for us to make sure we had indicators of progress or decline to look back on.  Luckily for Charlie, his seemingly infinite energy and innate drive have pushed him past plateaus and challenges; he is always moving forward.

In 2015, Charlie’s speech was rated at <5% intelligibility for an unfamiliar listener (after IS and then focal seizures, our next big battle became childhood apraxia of speech).  He mostly had vowel sounds, and only a few consonants - and those consonants were exclusively at the end of words (”at” could mean bat, cat, hat, etc.).  

As of this summer, Charlie has an 80%+ intelligibility score.  Where we used to not understand him because he couldn’t get the words to form, now sometimes we don’t understand him because he’s talking about stuff that’s over our heads!  In the last year, Charlie has learned all of the planets, dwarf planets, many constellations, all 50 states and capitals, every orchestral and many other world instruments, some dinosaurs, all of the oceans and the Great Lakes, and now... continents, countries, their flags, and their capitals.  

Charlie has beaten some long odds to get to this point.  He has worked so, so hard. Even if some things don’t come naturally to him, learning definitely does, and we are so excited to see the path he charts next.  (If it’s up to him, it’ll be around the globe.) 

[ohsweetjoy]

Overnight EEG! #sleepybaby #t21 #nicugrad #citylights #pdx #infantilespasms (at Randall Children's Hospital at Legacy Emanuel)

[blackalecat]

3 little babies. 👶🏽👶🏾👶🏽 #35weekspregnant #13monthsold #17monthsold #cousins #boymama #rainbowbaby #babyblastoise #aydenfern #veggiebaby #veganbaby #infantilespasms #iswarrior #warriorbabies #momlife #auntielife #sahm #babiesofinstagram

[hope4nathaniel-blog]

Hoping for the Impossible

During almost every conversation I have with our neurologist about Nathaniel's seizure treatment she will say to me "because Nathaniel's seizures are extremely difficult to control, we aren't ever expecting him to be seizure free. We just trying to control his seizures as much as possible." Because I'm so used to hearing this from our neuro and because seizures have become such a normal part of our lives, I have pretty much stopped imagining what life might be like for Nathaniel if he were to ever be seizure free. I've come to accept that the doctors think that Nathaniel will never be seizure free, even with medication. But sometimes in the late hours of the night when I'm alone with my thoughts, I let my heart hope for the impossible. That's exactly what happened last night at around 3:30 a.m.. I was leaning on the hospital bed rubbing Nathaniel's back, listening to the beep of monitors while he transitioned back and forth between sleep and crying. In my exhaustion, I felt the spark of hope. The first small hope I had was "what if the Keto diet actually works?" Next came "What if, for once, he's one of the small percentage of kids that this treatment actually causes to be completely seizure free? How would that improve his development? Might he actually be crawling by Christmas? How would it improve his fine motor skills? Could he more easily learn to feed himself? What would his personality be like if he's not constantly interrupted by seizures all day? How would his vision improve?" Imagining Nathaniel seizure free with improved development was beautiful. Dreaming some new dreams for his future encouraged me, even just for a little while. It's hard to hope for the impossible, especially when all the experts keep telling you that it can't be done. Even though I know that nothing is impossible for God and that miracles happen every day, I also know that miracles don't happen to everyone. But for today, I'm going to choose hope. I'm going to believe that this treatment is going to work. I'm going to have faith. I decided to focus on this verse over the next couple of weeks as we go through the steps for brain surgery and as we continue with Keto: "I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit." - Romans 15:13 I don't always have the strength to keep hope, but I MUST keep fighting and hoping for Nathaniel. So instead of giving up (like I often feel like doing) I'm going to look to my true source of hope and I'm going to pray to be filled with peace and joy. I'm going to keeping fighting for our fighter.

[lovewhatsmissing]

Today we are celebrating two whole years seizure free. Shortly after Sky's schizencephaly diagnosis, he was also diagnosed with a rare form of epilepsy called infantile spasms. Probably one of the most destructive forms, all developmental progress my sweet boy made in his short time was gone. They came in clusters, from only a few to almost 100 in minutes. Those short seconds trapped me in agony, while he came to frightened and crying he'd start seizing once more. All I could do was hold my baby, count, and fight back tears that would swallow me whole. In the darkness a miracle happened, and we found a medication that put them under control in just a few weeks. Those short minutes of calamity that ensued upon my son's body caused complete development delay, paralysis on the entire left side of his body, & hypotonia. We began early intervention therapy immediately and have been on the road to recovery since. Today I woke up with grace and overwhelming gratitude in my heart. We've been to hell and back so many times over the years and this boy always pulls me through. I don't know where I'd be without you my sweet little man. Here's to another incredible year. #lovewhatsmissing #epilepsy #infantilespasms #schizencephaly

[rivercove04]

You guys, we have are hitting some serious road miles right now with seeing specialists and therapy appointments..and with a lot of driving means a lot of expense with gas. I’m running a costume special with prices listed below. You can change it to any animal/character/colors, just inbox me your ideas with size and email for invoicing. This is only for the next few days as I have a lot events coming up with Zulily I will need to focus on. Zulily pays the bills and this goes towards all of Josiah's Journeys costs. We are still in need of raising money as well for a wheelchair hitch for the van and put ramps down in the house so he can roll out onto the deck,farm animals etc with his stander. Thank you for being part of Josiah’s journey in recovery and therapy! ♥️ Ages 0-2yrs $30 includes hat and dress $36 to add leg warmers 3-6yrs $35 includes hat and dress $41 with leg warmers 7-10yrs $45 including hat and dress $51 with leg warmers #maddiesmadhatters #josiahsjourney #roadtorecovery #roadwarriors #meningitis #infantilespasms #westsyndrome #cerebralpalsy #specialneedsmom #specialneeds #specialneedslife #halloween #halloweencostume #costume #therapy #handmade #crochet #crochetforacause https://www.instagram.com/p/BoFRzpAH3qx/?utm_source=ig_tumblr_share&igshid=8yd36tsz25py

[freddieos-mum]

Our Christmas in a nutshell ; Annual Freddie & his stocking picture (look at his bed hair!), a few from our lunch out (which lastest four hours and Freddie was a superstar - meal was incredible too!), then a few from The Christmasaurus which we went to see in London. Freddie’s first proper musical and he loved it, wanted to stand and dance.

[parkermeetsworld-blog]

Parker's Struggle with Infantile Spasms

When did you notice something was wrong?

Around late November we noticed some regression. Parker was losing milestones he had accomplished during therapy. In December he started to become more irritable and wasn’t responding to therapy. Late December we noticed Parker would freeze up and scream bloody murder. These episodes would last about 5 seconds. I immediately felt in that something was wrong. I just knew there was something neurological causing this. So I picked up the phone and called our neurologist. She felt that it didn’t sound like a seizure but wanted me to try and catch it on video. I could never catch it on video but then the day after I called her it turned into this long episode. He would jerk forward and his eyes would roll to the back of his head. He would do this several times. I immediately recorded it. We took him to the neurologist the next day where they told us he most likely has infantile spasms. I remember feeling so scared because the amount of concern the doctor seemed to have. I could tell by looking in her face that she truly felt terrible she was giving us this dreadful news. She told us to go home, pack clothes, and head to the children’s hospital.

(Watch our video of Parker’s spasms below.)

How did they diagnose Infantile Spasms?

When we arrived at the hospital they started to set him up for his EEG (electroencephalogram). An EEG is used to detect abnormalities that are related to the electrical activity of the brain. They would record his brain activity for the entire night. There were electrodes they attached to his head and secured with a bandage. During the EEG they look for a particular pattern called hypsarrhythmia (HIP-sa-RITH-me-ah). This is a chaotic pattern that is often helpful in confirming the diagnosis. About 2 minutes into the EEG he started having clusters of hysarrhythmia that confirmed he has IS. They could not confirm why he was having them because his MRI was completely normal.

(In the hospital where we received our diagnosis)

What is infantile Spasms?

Infantile spasms, also know as west syndrome, is a very rare epilepsy disorder that normally occurs during the first year of life. About 1 out of 5,000 babies will have west syndrome. Most children with IS go on to have developmental delays.

(In the hospital with IS. Wearing him was the only way to help him sleep.)

How did you stop IS?

Our first step in controlling these spasms was by putting him on ACTH. Acth is a steroid injection and is used as a hard hitting drug to stop these spasms. We were giving Parker ACTH (Acthar gel) twice a day, alternating thighs. One week into treatment and the spasms were gone! The steroids made him eat an insane amount of food, they made him fussy, and he rarely slept. We went through 2 of the hardest months of our lives as a family. It was constant fussy, nursing, eating, and crying. No sleep, no peace, no nothing. After the Spasms were gone for two months we started to wean him. Once we started the weaning process we were very worried they would come back…But guess what…THEY DIDN’T! And within one week he was smiling again! 

Parker a week after starting the ACTH weaning process.

We then switched him to topamax. The only issue he has had with topamax is a not eating. Luckily that issue has been resolved. Topmax works great. It doesn’t effect his mood. It regulates his digestive system. There isn’t anything we really dislike.

So how are things going?

Things are going WONDERFUL! He is 15 months now He is 5 months spasm free and he is surprising us every day! He is now rolling over, propping on his hands, and interacting more and more! 

If you have any questions about west syndrome please feel free to contact me via Facebook, tumblr, or YouTube.